Posted January 19, 2017
News, policy updates, resources, events, and advocacy opportunities
California Children's Services
Whole-Child Model Implementation Delayed; Some Changes to Advisory Group
Implementation of the state’s proposed Whole-Child Model for moving some CCS children into Medi-Cal managed care has been postponed until July 2018. Officials of the Department of Health Care Services (DHCS) announced the change at the January 11 meeting of the CCS Advisory Group. Originally scheduled for July 2017, the transition has been delayed due to constraints in the newly proposed California budget and other factors. However, DHCS staff provided updates at the meeting on various CCS topics, which are outlined in the presentation slides (PDF). For ongoing information about the redesign, see the Whole-Child Model website. Also see a revised membership list (PDF) of the CCS Advisory Group.
Related: Members Sought for CCS Technical Workgroup
As part of the CCS redesign process, the state is seeking members for a Performance Measures Technical Workgroup (TWG). Interested individuals should email CCSRedesign@dhcs.ca.gov by January 23.
Q&A: Care Planning for Children with Special Needs
What are some realistic options for paying for care planning? How do members of a care team gain access to a shared plan of care if they aren’t employed by the hospital? Experts in family-centered care planning for children with special needs tackle these issues and more in a blog post that builds on a November webinar. Read the Q&A.
Fiesta Educativa: Serving Latinos with Developmental Disabilities
Nearly 40 years ago, Regional Center employee Irene Martinez noticed that non-English-speaking families were receiving fewer services than English speakers. To educate and empower the non-English speakers, she helped found Los Angeles-based Fiesta Educativa, which today is California's largest nonprofit organization serving Latino families with children who have special needs. Read more.
Related: Most Recent Regional Center Purchase of Service Data, categorized by race/ethnicity, language, diagnosis, and age.
Did You Know?
New: Data on Children with Special Health Care Needs
Kidsdata.org has just released a wide-ranging dataset on children with special health care needs in California counties and cities (national data also available for comparison), in collaboration with the Child and Adolescent Health Measurement Initiative (CAHMI). The new datasets include local estimates covering demographics, insurance coverage, impact on families, and quality of care. See the data.
Children with Medical Complexity
Recorded Webinar: Manage Children with Medical Complexity in Your Practice
This recent webinar describes the population of children with medical complexity and discusses strategies for pediatricians to optimize health outcomes for this population. The slide deck (PDF) from the webinar and answers to audience questions also are available. Hosted by the American Academy of Pediatrics Council on Children with Disabilities.
Also see: Recognition and Management of Medical Complexity
Advocates Weigh In on How Possible Changes in Health Policy, Affordable Care Act May Affect Children
Families and care providers around the nation are concerned about the future of health care, the Affordable Care Act, and Medicaid (Medi-Cal in California). For children with special health care needs, some of the proposed changes could affect their eligibility for health services, access to providers, and the benefits included under health plans, though nothing is certain, including any timeline for changes. A number of organizations have highlighted some of the relevant issues:
- The California Children’s Hospital Association has written to members of the California Congressional Delegation (PDF) regarding proposals to repeal the Affordable Care Act and/or restructure the Medicaid program and how these might have a negative impact on the state’s children, particularly those with complex conditions.
- The American Academy of Pediatrics, California, sent a letter to the federal Senate Committee on Health Education, Labor and Pensions (PDF) expressing concern that positions taken by Rep. Tom Price, MD, the nominee for Secretary of Health and Human Services, conflict with the Academy’s 2016 proposed Blueprint for Children.
- A Sacramento, CA, television station featured the story of a family with children with special health care needs in a segment titled Marysville Family Concerned by Possible Changes to Affordable Care Act.
- The National Health Law Program has published Ten Ways the Affordable Care Act Helps Older Adults and People with Disabilities.
- The Association of Maternal and Child Health Programs has presented a 100-day policy agenda (PDF) to the incoming presidential administration, aimed at preserving and improving the health of all women, children, and families, including those with special health care needs.
- January 21 Women’s March on Washington Will Include a Disability Caucus
Study: The Role of Online Support for Parents of Young Children with Special Health Care Needs
When parents of young children with special health care needs (CSHCN) receive their child’s diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child’s immediate and long-term future that frequently lack answers. A new study reviews the information and support needs of parents of young CSHCN and examines whether online social support serves as an avenue for learning and empowerment for these parents. Read more.
Request for Applications
- January 23 Deadline: Apply for Technical Assistance in Adopting Standards of Care for CSHCN
- February 15 Deadline: Paul Marchand Internship in Disability Public Policy
- IEPs vs. 504 Plans: Pediatrician’s Office Often First Stop for Families Navigating Educational Issues
- Department of Transportation Focuses on Training to Improve Access to Air Travel for Individuals with Disabilities
- Paid Family Leave from the California Employment Development Department. Under California's Paid Family Leave Act, family members who must take time off work to care for seriously ill persons can receive payment for their caregiving.
Including People with Disabilities: Public Health Workforce Competencies
Tuesday, January 24
12 to 1 p.m. Pacific Time
Host: Association of University Centers on Disabilities' Public Health Team and The ARC HealthMeet
Read more and register.
Mental Health Services in Schools for Students with Intellectual/Developmental Disabilities
Thursday, January 26
10 to 11 a.m. Pacific Time
Host: USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
Learn more (PDF) and register.
In the News
- Betsy DeVos Apparently ‘Confused’ About Federal Law Protecting Students with Disabilities
Washington Post, 1/17/17
- Sky-High Prices for Orphan Drugs Slam American Families and Insurers
Kaiser Health News, 1/17/17
- 5 Things to Know About Racial and Ethnic Disparities in Special Education
Child Trends, 1/12/17
- Supreme Court Considers How Schools Support Students with Disabilities
- Opinion: The Life of a Disabled Child, from Taunts to Hate Crimes
NY Times, 1/6/17
- 'Smart Pills' Help Doctors Monitor Patients from a Distance
Children’s Hospitals Today, 1/4/17
We'd like to hear from you
Let us know what's happening with your organization or family. Email newsletter associate editor Danielle DeCosta at Danielle.DeCosta@lpfch.org with your news or updates. Or contact newsletter editor: Eileen Walsh at Eileen.Walsh@lpfch.org.